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A Bubble in Space Just for My Son and Me

I’m hesitant to write about this because of the sensitivity of the subject, but that also feels like a very good reason to do it anyways.

One of the most heartbreaking things you can experience as a parent is hearing your child say he wants to die. 

Our Bubble in Space

The school psychologist called me at home a few weeks ago to let me know my son’s teacher contacted her after he stated in class that he just wants to die. This blindsided me, because I’d just spoken to my husband about how well their class “friendship breakfast” went that same morning, because he helped prepare breakfast for the kids before he went to work. The psychologist already had a relationship with my son, as he sees her weekly for Lunch Bunch and stays to speak with her individually afterward, so she was able to make an informed assessment of his mental state.

She assured me that she did not feel that he was actively suicidal, that he used those words because he didn’t have any other way to express his intense frustration at a situation involving a classmate. She went through the official motions of asking him if he had a plan, which he didn’t, but after thinking for a few moments, he created a highly improbable scenario for her based on her request. His Asperger’s makes him take such questions as literal requests for information in addition to making it difficult to express his feelings and/or put them into words. [click to continue…]

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Our 2015 NYS Common Core Testing Refusal Letter

Last year was the first year we even had to consider refusing the New York State exams for grades 3-8. The “opt out” movement is gaining more traction, although “opt out” is not the phrasing you want to use with your school – you want to be clear that you and your child are refusing the tests.

Choose to Refuse

I am sharing my letter below for those who are searching for a sample test refusal letter, which I based on this refusal letter template. You will need to edit it to include your personal information, and perhaps change any “he” to “she” if you have a daughter. The paragraph I’ve put in italics is specific to my son’s situation, and this would be an appropriate place for you to personalize your letter, too.
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Here’s the thing about the “autism advocacy” organization known as Autism Speaks – it doesn’t advocate for people with autism. In fact, if it’s said to advocate for anyone, it would be for overwrought parents of autistic children. In fact, they’ve promoted a video sympathizing with a mother who says – with her autistic daughter in the room – that she considered driving herself and her daughter off the George Washington bridge because of the enormous burden of it all. The only reason she didn’t carry out the murder-suicide was because she worried about how it would affect her non-autistic daughter. Let me repeat: the mother said this, with the daughter she wanted to kill within earshot, for a camera crew representing an organization that purports itself to advocate for autism awareness. I will not link to this video because I do not want it to get more views.

Here’s the thing…I am autistic – Asperger’s, to get most specific – and I don’t want the type of “awareness” they’re advocating.

By hobvias sudoneighm (Flickr: /doh) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

What Autism Speaks Actually Advocates

Aside from sympathizing with parents who want to murder their autistic children, Autism Speaks has even more despicable things hiding in its wings.


Don’t get caught up in their PR spin: when Autism Speaks talks about all of the money they’re pouring into finding a “cure” for autism, what they’re really saying is that autistic people need to be selected out of the gene pool. There is no cure for autism. Once you’re born with it, it’s part of who you are. If someone could wave a magic wand and make me neurotypical (NT) – not an Aspie anymore – I would no longer be the same person. My personality would be different. My habits and affectations would be different. Maybe I would magically gain the power the navigate social situations the way most people do, but would I lose my natural empathy? Would I still be as intelligent as I am? Would I lose the ability to perform my job well because spelling and grammar errors no longer jump out at me as Things That Should Not Be? [click to continue…]

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Halestorm Rocks | Fandom Friday

After more than a decade of loving mainly all-male bands, I was introduced to Halestorm a few years ago. I’d never really been the hard rock/heavy metal type, but I connected almost immediately with the band fronted by charismatic Lzzy Hale. Halestorm, which is made up of Lzzy, her brother Arejay Hale, Joe Hottinger, and Josh Smith, has been likened to Evanescence. Both are female-fronted rock bands with male instrumentalists, and both Lzzy Hale and Amy Lee are talented vocalists and songwriters with large ranges.

Halestorm - Mz Hyde

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Asperger’s and Scripted Language, aka Bless Me When I Sneeze!

Social expectations don’t usually come naturally when you have Asperger’s. But Aspies like me also tend to live in a world guided by rules, both self-imposed and otherwise. One of the first things most children are taught is how to be polite to others, like saying please, thank you, and you’re welcome. You say excuse me when you have gas, and you reply certainly when someone else excuses themselves.

And you say bless you when someone sneezes.

If I Sneeze, Bless Me!

I get excessively agitated if someone doesn’t say, “Bless you!” when I sneeze. It’s worse when both my husband and my son fail to do so, and I will clear my throat and point out that I just sneezed. I’m sure it irritates Tom when I do this, but he blesses me after the fact.

It’s not that I’m superstitious about evil spirits, or whatever it is that started people saying, “God bless you!” in the first place. It’s that I was taught that you always bless someone when you sneeze. It’s just what you do. Every time.

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Getting Back to Being Me in 2015

To say that 2014 was a bad year for me is a bit of an understatement. Losing my dad to cancer was a blow I still haven’t recovered from. I know I’ll never “get over” it, but I just haven’t been myself in the haze of my grief. And I realize now that I didn’t start grieving when he died in June. I’d started actively grieving last January. Consciously, I still believed he would recover, that he would beat the odds, that mantle cell lymphoma would not be the death sentence that all of the research said it was.

Grief is the price we pay for love.

But my subconscious knew, and my behavior became more erratic, more out of control. I was an emotional wreck. I was needy and made bad decisions. And I missed a lot of time with my dad, knowing he was too sick for visits, but assuming we’d have time to play catch up when he got better. I never got to do the “interviews” he wanted to do with me so we could get his mantle cell lymphoma blog up and running. The blog never happened. And I wish I’d just gone to sit with him even though he didn’t want us to see him “that way.”

Going Numb

After he died, my brain did something completely different than the series of meltdowns I’d been having out of anxiety over his failing health. It went numb after my tears had run dry. Not just in the emotional sense, but cognitively. I couldn’t concentrate. I couldn’t focus. Being left alone with my thoughts was generally a bad idea, because then I could end up having a panic attack that escalated into a full meltdown where the tears would pour out and I was completely inconsolable. The novel I’d started writing got abandoned because I simply couldn’t get words down. Client work was difficult, but it didn’t really suffer. Once I sat myself down and forced myself to work, editing nonfiction was a fairly straightforward task. It was trying to do anything remotely creative that was nigh on impossible.

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Holiday Gift Guide 2014 – For Him, For Her, For the Kids

Black Friday and Cyber Monday may be over, but retailers both online and offline are running deals throughout December! Many brands contacted me about reviewing their products for the holiday season, but I only agreed to work with the few who resonated most with me and my family. There are a few other things I purchased myself that I think are worth including here, too, and I’ll make sure you know which is which. Here’s what’s on my holiday gift list this year:


Mantry Crates

Mantry, “the modern man’s pantry,” is a monthly American food subscription service introduced to me by team member Reggie, who offered to send me a crate to try. Tom loves food and loves to cook, so I was happy to accept the offer. He couldn’t have been happier with the Campfire Cookout box: sausage, bacon – what’s not to love? Other box themes have been seafood, coffee, and craft beer. If you know a man who loves to cook, a Mantry subscription might be a good call. Of course, in the interest of equality, I don’t think you have to be a man to appreciate the monthly food selections. [click to continue…]

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In the quest to discover the root of at least one of my physical problems, I had a colonoscopy yesterday, Tuesday. Monday, prep day, was my birthday. Worst birthday since the day I was born, since I almost died of pneumonia that day. But since my abdominal pain ended up not being my ovaries, I’ve been seeking gastroenterological care and hitting dead ends with the CT scans, the ultrasounds, and the x-rays – I said sure, let’s do another colonoscopy.

It was my third colonoscopy. and I just turned 36. (Never had GI problems before I had TJ. I love him so much, but he sure messed up my innards.) My previous colonoscopy was only two years ago, but the NP at my primary doc’s office told me her husband has a colonoscopy every year, and they always find new polyps when they go in.

But before I get to my results, let me regale the story of the night of my birthday.

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World of Warcraft | Fandom Friday

It’s no secret that I love playing World of Warcraft. It’s even in my Twitter bio. This week, I’d like to geek out about WoW because the next expansion gets released next week: Warlords of Draenor.

Warlords of Draenor is Coming


My guild, Sapere Aude, is getting all exciting about playing together. It’s been a really long time since we’ve had new content that took more than a few hours to complete. The pre-patch event with the coming of the Iron Horde has been a small diversion that adds some flavor and anticipation, but we’re waiting for the big event!

Of course, my birthday falls only a few days after release day, and one of my gaming groups on Polyvore is running a “birthday presents” contest in celebration of the group owner’s birthday today, so I decided on some WoW gifts I wouldn’t mind getting.
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I’ve had a few friends suggest the game Quandary to me, but for whatever reason, I never sat down and checked it out until The Mission List selected me to write a sponsored post about it. Quandary is a free online game targeted for kids ages 8-14 to help them learn how to recognize ethical issues and deal with challenging situations in their own lives, something especially important for kids on the autism spectrum, but relevant to anyone. That may not sound like a lot of fun at first blush, but the cool part is that players “lead a new human colony on a distant planet. They must make difficult decisions in which there are no clear right or wrong answers but important consequences – to themselves, to others in the colony and to the planet Braxos.” As a player, you are the captain of Braxos, and therefore responsible for making decisions (along with the aid of a grand council back on Earth) that will affect the lives of everyone in your new civilization.

Quandary Opening Screenshot

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